rsd - like someone to talk to about fibromyalgia(reflex sympathetic dystrophy)

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willowsgrandma
Regular Member


Date Joined Jan 2010
Total Posts : 78
   Posted 1/31/2010 6:19 PM (GMT -7)   
i really do not know how to use this site to be able to chat...is anyone available to chat about rsd?

Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17097
   Posted 1/31/2010 6:43 PM (GMT -7)   
Hi, Willowsgrandma, and welcome!  Well, I had never heard of RSD so I did a search.  This is a different illness than fibromyalgia but we probably have some similar problems.  Doctors are starting to think that fibromyalgia is a neurological problem. 
 
The pain in fibromyalgia can be anyplace on the body but most of us have problems with pain in our backs, shoulders, and necks along with other symptoms.  What I was reading was RSD affects your arms and legs.  We do have that too with fibro.  But our pain travels.  We will have it one place and maybe the next day it will be gone but pop up somewhere else. 
 
Be sure to check out the Fibro 101 thread...the second thread on the forum.  There are links to good info about fibromyalgia and perhaps some of this could help you too.  There is also a link to symptoms of fibromyalgia.  You will see what is similar and what isn't. 
 
I'm sorry you are going through this but we still may be able to help you.  We use moist heat to help with pain.  Hot showers and baths are wonderful and some use a Bed Buddy.  You can get these at Walgreen's and other places or you can make your own by taking a tube sock, filling it 2/3's full of raw long grained rice, and tying a knot at the end of it.  Pop it in the microwave and it gives off moist heat due to the moisture in the rice. 
 
I'm so glad you found us and joined in!  We have our chats on Thursday nights in case you are interested.  Don't hesitate to ask questions because we are here to help you.  I hope to hear more from  you soon.
 
Sherrine    


Forum Moderator/ Fibromyalgia
***********************
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7

Post Edited (Sherrine) : 1/31/2010 6:50:30 PM (GMT-7)


willowsgrandma
Regular Member


Date Joined Jan 2010
Total Posts : 78
   Posted 1/31/2010 6:52 PM (GMT -7)   
sherrine, do you have an email address? i'm sorry about my memory (or lack of). i suffered a spinal cord injury last jan. followed by surgery then a dignosis of rsd in april. the skin tenderness and burning is sooo bad. thanks for the suggestions. i will be going to wlgreens tomorrow for sure. i am so glad maybe finally i have someone to talk to. i only have a few family members here in this small texas town and none can relate. again thanks.

Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17097
   Posted 1/31/2010 7:03 PM (GMT -7)   
Right under my name at the left, you will see a little envelope.  Click on that and you can send me email.  But, we have many wonderful people right here on this forum that would love to help you and all have great ideas!  If you ask for help, they jump right in to help you and we do really care about one another on this forum, too.  You just didn't get much of a response because it's the weekend and people here also probably don't know what RSD is.  If you ask for help with pain or ideas to help with burning pain, you will get many ideas if you post a question here on the forum.  I know there are members that suffer with burning pain, too, and they might have other ideas to help you.
 
But, stick with us and we will give you a helping hand.  It's so difficult to be in chronic pain and no one understands.  But, we definitely understand pain here on this forum.  It's a good place to vent, too, when things just get you down and also a good place to come and share your good days, too!  So, as I said before, I hope to hear more from you soon!
 
Sherrine    
Forum Moderator/ Fibromyalgia
***********************
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7


crazykitty
Veteran Member


Date Joined Jul 2009
Total Posts : 4796
   Posted 1/31/2010 7:09 PM (GMT -7)   
Hi Willowsgrandma, Welcome to the forum. I never heard of RSD until I saw an episode
of Mystery Diagnosis. A young woman who was a dancer suffered a severe sprain ended
with a chronic painful condition. It took a long time for her to get a diagnosis of RSD.
The illness is a neurological one with alot of the same symptoms of fibromyalgia.

Sherrine gave you some helpful information. You mentioned in another post that you are
taking Lyrica. I hope you are getting some pain relief. There are members here who take
Lyrica. Feel free to ask questions, vent or comment. We all understand pain!

Wishing you the best. Glad you have joined our family!
Hugs, Robin
Fibromyalgia, MCTD (Lupus, Scleroderma & RA) Raynaud's, Osteoporosis,
Osteoarthritis, Degenerative Disc Disease, Migraines, and Hypertension
Prescription Meds: Savella, Cyclobenzaprine, Methotrexate, Diltiazem, Boniva,
Folic Acid.  OTC Meds: Multi-vitamin. Vit, D, Vitamin B12 & calciim supplements
 
 


WhiteChocChip
Regular Member


Date Joined Jun 2009
Total Posts : 439
   Posted 1/31/2010 10:54 PM (GMT -7)   
I am on randomly throughout the day, but most of us come to chat on Thursday nights in the Chronic Pain room. To get to the chat room, scroll all the way up to the top of this thread. Above your first post is 3 yellow-ish boxes, above them a large blue bar, and above that is a dark blue bar. Inside the dark blue bar, there are several options, written in white. Click the one that says "Chat". Then you can select the room you want to go in. A lot of the time if there are only a few people on, they will all gather in the room that has the most people, so don't be worried if the Fibro room is always empty.

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13458
   Posted 2/1/2010 4:33 AM (GMT -7)   
WillowsGrandma, I am very familiar with RSD and I am very sorry that you have dx'd with this painful disease. I am from the chronic pain forum here at Healing Well and we have some folks there with RSD so please consider coming over and introducing yourself. It can be quite disabling for many people when it strikes. RSD usually comes about from an injury or trauma, such as surgery. I would highly recommend that you find a pain mgt dr that is familiar with RSD and knows how to treat a patient with RSD. There are some viable options out there now treatment wise, from medications to SCS devices being implanted. I too live in Tx. Back in the early 1980's when pain mgt drs started diagnosing RSD in patients no one believed such a critter existed, they used thermagrams to measure the differences of skin temperature. Back then insurance companies would not pay for testing said it was not a disease, treatment for RSD has come a long ways since then. The more you educate yourself about this disease the better you can understand it. Some of the symptoms may be similiar to Fibro but RSD is whole different can of worms and comes with its own set of problems. Please take care of yourself.
 

crohns disease dx 2002 & small bowel resection, still looking for remission whatever that is, chronic pain 22 yrs, added ulcerative colitis 6-05 to the mix, high blood pressure 28 yrs, aortic heart valve insuffiency, depression, osteoarthritis, osteoporosis lumbar spine, scoliosis lumbar spine, peripheral neuropathy hands & feet, COPD & on oxygen therapy, lupus & psoriasis and psoratic arthritis. Several other health issues just not enough room to list it all. Too many surgeries to list and too many medications to list. Currently on 17 different daily medications. Intrathecal pain pump implanted June 05.


Jahmai
New Member


Date Joined Mar 2010
Total Posts : 1
   Posted 3/2/2010 3:10 PM (GMT -7)   
hi,I have RSD have had it for 12 years now. I just did a web search and found this forum because I was looking up Savella & RSD specifically. I am having very good results with this medication but now unfortunately Healthspring will not approve payment & I cannot pay for it. I am on SSDI I also am on Part D low Income help so the drug companies will not help either. I appealed & what they told me is it is an off label use not indicated for RSD only fibromylagia. I am a former Rn previously drugs were approved for off label use . the way things are now is so difficult. I will continue to fight this ruling though. But anyway to the person who has RSD I will be happy to assist you with any help or questions or point you in the right direction.
Sincerely,
Jahmai

willowsgrandma
Regular Member


Date Joined Jan 2010
Total Posts : 78
   Posted 3/2/2010 4:20 PM (GMT -7)   
eyes redface cool rolleyes hi johmai! glad you joined this forum. everyone is so kind and helpful here. i took lyrica 5 1/2 mo. ($217/mo. that's with 30% discount from mfr.) with little relief. i have been taking savella for 1 1/2 weeks and i can already feel some relief. i still have arm pain-the burning and skin tenderness drives me crazy! (short trip haha). i am also taking gabapentin 300 mg 3xdaily. i am on 50 mg 2x daily of savella. i took the rx to be filled today. i had the dr. to write the rx for 100 mg-that way i can break them in half and it cost me $63/30 tabs. what mg of savella are you rx'd? my dr. wrote the rx to read: 1/2-1 tab daily. i had called the pharmacy sat. the price for 60 tab.-50 mg. was $130. so by getting the larger mg it basically cuts the cost in half. would that work for you? please let me hear from you-you're the first person on this forum that(besides me) has rsd. take care-i sincerely hope your pain eases up. Donna

BobinmidMO
Regular Member


Date Joined Mar 2010
Total Posts : 39
   Posted 3/8/2010 4:14 PM (GMT -7)   
Hi,
 
I couldn't figure out a way to make a reply to your question about RSD.  I'm BobinmidMO.  Do I think you might have RSD?  With what you've shared, I would certainly look in that direction.  The way you described the pain is what made me the most positive.  Let me share my few ideas or ways you might be able to tell?
 
1st:  Yes the needles are part of the normal gig.  Fun wasn't it!  RSD can't really be diagnosed this way, but it can tell the doc if there is a possibility of nerve damage.
 
2nd:  RSD is a syndrome, so it's more about putting all the pieces of the puzzle together.  Do you have swelling?  Is there huge amounts of pain that might include burning, stabbing, a long dull ache that feels like you've been hit over and over thus causing the deepest bruise you've ever had?  Is there discoloration?  Color changes can be a nice rose color, deep red, purple and when you're really unlucky even black as black.  How about temp changes in that area.  Oddly enough for example, my leg(s) would usually be as much as 5 degrees colder or hotter than normal, and this was about 90% of the time.  Now over the years I've found they're mostly hot, but cold can still occur.  Do you find it had to move that part of your body?  Loss of range of motion is common.
 
3rd:  Now you need to find a doctor who isn't scared of RSD/CRPS.  This is the most imporant thing trust me.  You need a docto who isn't afraid of opiods such as morphine to manage pain because you might get to the point where that's your only option.  You need a doctor who'll care enough to not put you through the wrong type of treatments at the wrong time.  RSD is something that must be handled carefully at each stage, so seek out a doctor who assures you he'll help, but not go crazy with treatments that only cause you more pain in the end.
 
4th:  Treasure your family and friends.  Without them, you'll go nuts.  Oh, and while you're at it, please try and not allow your RSD to take over your life.  Now that's a tough order I know, but the harder you try and live life as normally as possible, the better you'll feel both in body and mind.
 
You've got a big heart, and so mine goes out to you this evening.  Please take care and keep me posted on how you're doing.  Bob.
After an accident in  1997 crushed the nerves in my pelvis, halfway down the calf and at the fibular head (knee), my left leg slowly started to turn color from the foot up, along with swelling and temp change.  Within 2 weeks I was diagnosed with RSD.  Within 6 months, I had purple, red and some black area's almost to the knee area.  By 1999 I landed in a wheelchair and started a life taking narcotics all the time.
 
In 2004 I got an Intrathecal morphine pump, and I just got it replaced around a year ago, so now I'm on my 2nd model.
 
5 years ago the RSD spread to my right leg and has done around 80% of the damage it did to my left leg in half the time.
 
1 1/2 years ago I went septic, and the infection did go body-wide.  After 2 days in the hospital I then had a clot in my lungs.  Both should have killed me, but this time I got lucky.  Meanwhile I've been battling blood clots for the last 4 years.
 
Last fall the doctor's decided I needed to have both legs amputated above the knee's, but I decided I could only handle one at a time, so I went with the left leg since that one is a little worse off.  The right leg is now black all the way to the knee.
 
I haven't slept in a bed for over 12 years and have instead accepting the fact that I can only sleep in a chair upright.  Since I'm in RSD Phase III, it's still progressing, but I refuse to go on a pity party because those who do, party alone.  Thanks to a wife of 27 years and great family and friend support, I'm only half nuts half the time.
 
Guess that about say's it all.  Bob.

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